Marti Feldhake
ED 226
Mental Retardation
September 24, 2009
“Mental retardation is a condition diagnosed before age 18 that includes below-average general intellectual function, and a lack of the skills necessary for daily living.” as quoted by Medline Plus. Although mental retardation can seem like a rare occurrence, it is seen in somewhere between 1-3% of the population (Lewis, 2007). The term mental retardation covers a few different conditions that vary in cause and manifestation of disability. Like many other disabilities, MR varies greatly in its severity from profoundly impaired to mild or borderline retardation. Recently, there has been a significant shift away from focusing on the level of retardation, and more on the level of intervention and care needed to provide access to a normal life. There is a general break down of different types of Mental retardation, but in the world of education many times there is also a focus on the IQ level of the individual, and where that puts them in the spectrum of severity. With an 85% concentration, the largest group of mental retardation falls in the mild range of retardation. The IQ level at this range is generally between 50-55 but can go up to 70. Moderate mental retardation covers about 10% of the population, and falls in the IQ level of about 35-40 but can go higher. Severe mental retardation only effects 3-4% of the population and is characterized by an IQ falling between about 20-25 but can vary. Profound mental retardation is the smallest group and quite rare with it only affecting 1-2% of the mentally retarded population. It is defined by having an IQ below 20-25 (2008). Downs Syndrome is amongst the most commonly recognizable types of metal retardation, and is a product of an added chromosome, resulting in 47 instead of the standard 46 chromosomes. Downs is particularly recognizable to the lay person due to it’s profoundly common facial features. Although few people with downs have all the characteristics, some of the ones that may appear are almond shaped slanted eyes, flat nose, thick eyelids, broad and flat face and head shape, and a tongue that may appear too large for their mouth. People with downs are particularly prone to circulatory, gastrointestinal, and respiratory disorders but increasingly better medical care and antibiotics are greatly increasing the life expectancy of these people (2000). Cretinism is a thyroid deficiency that results in severe mental retardation as a result of an endocrine imbalance. This generally happens during the prenatal and early postnatal parts of development. Individuals with cretinism normally have dwarf like qualities with an average height just over three feet, and short stubby extremities and features. If the condition is recognized and treated early on in infancy, the individual can have resulting positive benefits concerning intelligence, but will still experience damage to their nervous system and physical development (2000). Cranial abnormalities are another type of mental retardation where there are significant abnormalities in the heads size and shape, and in which the causes are difficult to define or pin point. The condition macrocephaly, falls under this category and is defined by a case of“large head ness”, where the brain tissue and skull has an increase in size and weight. Individuals with this condition suffer from visual impairment, convulsions, and neurological symptoms. Mirroring this condition, microcephaly is a disorder in which the brain and skull are significantly smaller that normal, resulting from the brain not developing entirely. Individuals with microcephaly fall within the moderate, severe, and profound mental retardation spectrum (2000).
There are many found causes of mental retardation, but even in light of the modern medical world only 25% of cases can be pin pointed down to a specific cause. Out of the cases that there can be a cause identified, there are a few categories that it can be broken down into. The causes range from disorders that are inherited while the child is still in the womb to ones that can happen late in life. Genetic and chromosomal factors are the cause of some cases of mental retardation. Mental retardation tends to run in families especially with mild retardation (2000). Genetics and chromosomal causes have a heavy influence in more rare conditions such as Downs Syndrome. In cases such as these, the deficiency is a result of metabolic alterations that produce a defect in the brain. There are many identifiable genetic abnormalities that can be past down such as Hunter Syndrome, Hurler Syndrome, Tay-Sachs Disease, Rett Syndrome, Galactosemia, and Lesch-Nyhan Syndrome amongst others. Infections and toxic agents are other factors that can cause mental retardation to a child in the womb, but is not limited to this period of development. In some of these cases, certain diseases that the mother of the child carries such as German measles or Syphilis, may lead to brain damage of the child. Toxic agents such as carbon monoxide or lead and the taking of certain drugs by the mother also can result in brain damage (2000). Malnutrition can also take part in some mental retardation. Especially early on in development, the lack of essential nutrients and proteins can result in permanent mental damage. This can come from the mother not getting the diet she needs or from the child experiencing severe malnutrition (2000). Trauma before, during, or after birth such as hemorrhaging, the lack of oxygen, or head injury can result in some cases of brain damage. Different types and degrees of mental retardation can greatly change when and how it can be recognized. In some cases, the condition can be found before birth and in others it may take years into the child’s development to notice an abnormality. Generally, abnormalities at birth are recognized by an unusual physical appearance or a neurological deficiency (Sulkes, 2006).
Sometimes children will outwardly appear normal, but have signs of serious illness. More severe mental retardation many times will delay normal developmental basics such as rolling over, sitting up, and standing (Sulkes, 2006). As the child grows older aggression and self-injury are also signs that there could be a mental deformity (2006). Explosive outbursts and temper tantrums accompanied with frustrating situations in some cases are a common occurrences and strong indicators of a deficiency (Sulkes, 2007). Even things such as a lack of curiosity and prolonged infantile behavior are early signs of mental retardation (Lewis, 2007).
For most children with mental retardation, signs of an abnormality do not start to show until the time of preschool. The development of language is a very big indicator at this age being that children with mental retardation are generally slower to put words together, use words, and speak in complete sentences (Sulkes, 2006). As children get older mental retardation is noticed by IQ tests when the individual scores in an abnormally low range. For the majority of individuals with mental retardation, their cases are mild and allow them to participate socially and even academically at a normal rate for their first five years of their life, but start to struggle significantly when in a formal school setting. As a common rule of thumb, individuals with mental retardation fall behind socially and intellectually when developmental millstones come and pass (2006).Being that mental retardation can develop and multiple different times in an individuals development, ranging from in the womb to years into life, diagnosis tends to be different from individual to individual case. When a child is suspected of having mental retardation, they are normally evaluated by a team of professionals including
a developmental pediatrician or pediatric neurologist a psychologist, occupational or physical therapist, speech pathologist, special educator, social worker, or nurse (Sulkes, 2006). The professionals performing the evaluation will determine what tools and methods are appropriate to decide if the child is indeed considered mentally retarded (Barkoukis et al., 2009).
Early diagnosis of mental retardation is considered to be beneficial to the child so that an appropriate plan for education, and the learning of social skills can be made individually for the child (2006). There are many tests that may be used to determine the intelligence level of the child, some of them being the Weschsler-Intelligence Scale for Children (WISC-IV), the Bayley Scales of Infant Development, and the Vineland Adaptive Behavior Skills test (Barkoukis et al., 2009). In formal testing, there are three parts; interviews with the parents, observations with the child in question, and norm-referenced tests, such as those already mentioned (Sulkes, 2006). The purpose of the tests is to determine the level that they are intellectually functioning at and to possibly discover a cause. This will aid the professionals that end up working with the individual on how to plan individualized interventions that will increases the individuals level of function (Sulkes, 2006).
After a child has been diagnosed with some form of mental retardation, a treatment plan is developed. The word “treatment” when used in the cases of mental illness does not refer to changing the individuals IQ level or social capabilities but instead concentrates on the individual and unique education of the child. There currently are no treatments in the classical sense of the word for cognitive deficiency. Instead, special educators, language therapists, behavioral therapists and occupational therapists are all integral parts to the future development and education of the child (Harum, 2006).
In the United States there are federal government laws protecting and mandating the education of children that are considered mentally retarded. Due to their disability different and specialized approaches to education must be made and Individualized Education Plans (IEP’s) are created uniquely for each child in need of services. IEP’s are targeted to asses the individual needs of the child, specifically in relation to their disability, and then devise a plan to provide ways to reach the goals set by the IEP (2006).The primary goal of treatment for a child with mental retardation is to aid then in reaching their fullest potential, much like any other child with a normal level of IQ (Lewis, 2007).
Although there is no medication to change the level of cognitive impairment, a portion of individuals with mental retardation are prescribed psycho stimulants due to hyperactivity also known as ADD or ADHD. Up to 50% of individuals with mental retardation are prescribed these medications. Occasionally an individual may be medicated for coexisting conditions such as psychiatric disease or behavioral disturbances (Harum 2006).
Another common intervention to mental retardation is family therapy and support groups to help families with a mentally retarded member cope with the daily demands and struggles that come along with raising a mentally retarded child. These services tend to focus on the love and support of the family unit (2006).
Although many times, mental retardation is not possible to avert, there are precautions that can be taken to prevent some cases. Genetic screening for individuals that know there is a possibility for deformity that runs in their family is available. Also, early screenings of a child before birth may sometimes catch a case in time to prevent some level of mental deformity. There are government programs that have been instated to insure sound nutrition to be offered to the underprivileged to prevent cases of malnutrition. There are environment programs to reduce the level of exposure toxins but the effects of this may take years to form (Lewis, 2007).
Works Cited Barkoukis, A., Reiss, N.S., & Dombeck, M. (2009).Mental retardation: diagnosis. Retrieved from http://www.mentalhelp.net/poc/view_doc.php?type=doc&id=14490&cn=37 Harum, K. (2006, April 7).Mental retardation: treatment and medication. Retrieved from http://emedicine.medscape.com/article/1180709-treatment Lewis, R.A. (2007, November 12).Mental retardation. Retrieved from http://www.nlm.nih.gov/medlineplus/ency/article/001523.htm Sulkes, S.B. (2006, October).Mental retardation/intellectual disability. Retrieved from http://www.merck.com/mmhe/sec23/ch285/ch285a.html (2008, May 12).Mental retardation (developmental disability). Retrieved from http://psyweb.com/Mdisord/jsp/menret.jsp
(2006, October 31).Mental retardation. Retrieved from http://www.hmc.psu.edu/childrens/healthinfo/m/mentalretardation.htm
(2000).Dial for health. Retrieved from http://www.dialforhealth.net/default.asp?loc=contactus.asp
Marti Feldhake
November 21, 2009
ED 226
Part 2
Anyone that has ever met or interacted with an individual with MR will tell you that having MR does not mean that an individual does not have a specific personality, likes and dislikes. As one respondent answered when speaking about her younger sister said, “Claire knows what she likes” (MF/RM/MR/11.09.09/3C). People with MR develop a personality and find things that they enjoy just like any other cognitively “normal” person. A common theme that I recognized in my interviews with people was a tendency toward activities that were many times very solitary and repetitive. One respondent with a younger sister with a moderate case of MR said, “Mary would occupy her time with things like television, music, and twirling pretty things” (MF/LB/MR/10.04.09/2A). Another respondent talked of how her sister had a large imagination and always found ways to entertain herself (MF/RM/MR/11.09.09/3K). The same respondent said her sister had a strong tendency of being very organized in the way that she would play and occupy herself. She said her sister Claire would be highly organized and in the way that she played and would take her time to set things up (MF/LB/MR/10.04.09/3B).
Also, in much of my conversation with people, I found that most individuals with MR have relationships and friendships with cognitively average people that differ very slightly from those without an individual with MR. One respondent talked of the relationship between her sister, who has mild MR, and her best friend Evan who does not have a disability (MF/RM/MR/11.09.09/3E).
People that know individuals with MR will also tell you that having MR is not synonymous with incapable or incompetent. One respondent I spoke to talked about the capabilities of her high functioning downs syndrome son. She said that once she woke him up and made sure that he was out of bed in the morning that he is able to take care of himself and get ready for school on his own (MF/KJ/MR/11.13.09/4B). Other than keeping an eye on him to make sure he doesn’t miss the school bus, Andy is fully capable of being independent (MF/KJ/MR/11.13.09/4B). Andy’s mother also spoke of how everyday after school Andy comes home to an empty house for about an hour until she can get home from work. While Andy is at home alone he knows whom to call if there were to be a problem and Andy’s family has good neighbors that he could go to if he needed anything immediately (MF/KJ/MR/11.13.09/4C).
A mother spoke of her adult son Tom who has downs syndrome, “Tom works hard, and generally works cheerfully. He’s a good example, not just to his siblings but to me as well. He likes to find ways to help, to surprise us. This conveys at least two things; he’s capable and he uses his abilities to express love and contribute to the good of the family as a whole. There are many things Tom can and does do and do very well, and that is both a real help and a good example” (MF/MR/MR/11.21.09/5A). At the same time, even Tom can sometimes realize that he has limitations as a result of his disability. Tom’s mother said that as he grew older Tom started to recognize differences more and more. Things like not being able to keep up with the flow of conversation even as well as his seven-year-old brother, for example, and it bothers him (MF/MR/MR/11.21.09/5L). Another individual that I interviewed spoke of how although her sister is not incredibly high functioning she wants and desires to be independent and always bathes and dresses herself. This same girl goes to bed early and wakes up on her own (MF/LB/MR/10.04.09/2C).
Although it became very apparent in my interviews with people on this topic, that individuals with MR are very capable beings, many times there is a very specific and necessary amount of guidance needed to aid them in their pursuit of independence. On respondent spoke of her adult age daughter and how she handles the amount of guidance and overseeing she gives her. She spoke of her daughter Mackenzie and how she has learned over the years that Mackenzie is fully capable of handling tasks that she is given but that she can’t be given more than one or two things to do at one time because otherwise she will not be able to stay on task (MF/TP/MR/09.28.09/1D).
On of the topics that my interviewees talked very passionately about was the affect of disability on the family. In all of my conversations it was unanimous that no matter which way you play it, disability will affect the family. For most, those effects are positive and beneficial. One of the people that I interviewed felt very strongly on this topic in particular. In my conversation with her she said that she thinks every family should have a child with special needs. She said, “Having a child with special needs makes you want to go the extra mile to help others, it gives you more compassion.” (MF/TP/MR/09.28.09/1R) This same woman spoke of how having a child with disability helps to keep her family together and to keep her focus on her family. She thought having Mackenzie in her life forced her to focus on her family dominantly instead of something else like her occupation, which in her life, takes a back seat to her daughter (MF/TP/MR/09.28.09/1V). As a result of living and learning with Mackenzie, their family as a whole has had their eyes opened to the great need in our world today for the acceptance of all people (MF/TP/MR/09.28.09/1Q).
Another common topic that was talked about greatly was the notion of family’s and individuals possibly missing out on things as a result of a family member with MR. For most families that I spoke to, they adamantly claimed that their lives, and what they experienced in them, was not changed as a result of having a member of the family being MR. A mother of a adult son with MR said that her family did not miss out on anything that a family without a child with MR could do (MF/KJ/MR/11.13.09/4L). Instead, most people I spoke to talked about the ways in which they altered situations to fit their families specific and unique qualities and needs. One of the individuals I spoke with has a young sister with MR and she said that she has witnessed over the years the way that her family simply adjusts ordinary things just a little bit to fit Mary’s needs (MF/LB/MR/10.04.09/2S). Mary, an individual with moderate Downs Syndrome, has a tendency of getting impatient in common everyday situations. When Mary gets upset or mad about something, she cannot understand why she feels that way and gets frustrated (MF/LB/MR/10.04.09/2M). Its situations like these that Mary’s family works to avoid in their small alterations. Many of these alterations have to do with simply letting m Mary be involved in everything that the family does even if she can’t do everything “perfectly.” Mary’s family eats dinner together every night and afterward prays a rosary together. Although she does not know how to do it correctly, Mary is given the task of leading a decade of the rosary during these family prayer times (MF/LB/MR/10.04.09/2B).
Tom’s mom expressed a similar theory for her family. She talked of how doing something’s with Tom can be more complicated and require special consideration. They normally result in not everyone being able to do exactly what they’d like to do, but when one of these issues arises it’s an opportunity to do what families are made to do: whatever’s necessary to love one another while meeting the needs of each (MF/MR/MR/11.21.09/5M).
If there is one entity affected by MR more than the family unit, it would be marriage. Raising a child with MR is a uniquely difficult task unlike any other, posing problems and hurdles that no other situation can. Monetarily speaking, parents of a child with MR generally take on more responsibility with medical needs. Out of all of the individuals that I spoke with only one said that never encountered any added health services or medical bills as a result of their child or siblings MR disability (MF/TP/MR/09.28.09/1E). One respondent spoke of how her mother had to tale her younger sister Mary to another city, a distance away to see a special doctor every six months (MF/LB/MR/10.04.09/2E). Mary was born with significant health problems concerning her heart when she was born and still deals with it today fourteen years later. Fortunately, Mary’s family gets some financial help from the government to ease the added cost of medical bills (MF/LB/MR/10.04.09/2D).
A common symptom of Downs Syndrome is loose joints. Although this may seen harmless and insignificant it is not unusual for individuals with MR to experience added health problems as a result of this condition. One respondent spoke of her younger sister Claire. She talked of how she felt her family was fortunate because Claire did not have many health problems as a result of her Downs Syndrome compared to others. Claire did have to have knee surgery at a very young age as a result of her loose limbs and also she saw a physical therapist for a few years to help develop her fine motor skills (MF/RM/MR/11.09.09/3F). Tom’s family experienced a significant financial impact at first but due to excellent health insurance they did not feel the full force of it (MF/MR/MR/11.21.09/5B). Besides speech, OT and PT Tom’s parents have not experienced any unusual expenses directly connected to his medical condition (MF/MR/MR/11.21.09/5C).
Some families are not quite as fortunate, such as in the case of Andy’s family. Andy, a 21 years old boy with Downs Syndrome has had significant health problems since he was born. His mother spoke of how financially their family has struggled at times to cover some of the medical and therapy bills that their insurance would not cover. As a result they had to learn to balance what Andy needed and what the rest of the family needed. Andy’s mom said that they have lived a much more simple life than many of their friends and families but they feel as though they have not “missed” out on anything (MF/KJ/MR/11.13.09/4E). This was a common reaction that I encountered when this topic was discussed, that a lack of extra money and resources did not result in a lack of happiness or fulfillment in life. Rather, many families valued and focused on what they had been given far more than what they lacked in the worldly sense.
Monetary and health responsibilities are only the beginning of the many duties that parents of children with MR take on. Raising and parenting a child with MR is a much different commitment than that of raising a cognitively normal child. Mary’s parents will attest to this. Mary was adopted right after she was born and her parents were well aware of her Downs Syndrome long before her birth. In adopting Mary they committed to a different obligation than that of their other children (MF/LB/MR/10.04.09/2O). One respondent, when asked how her life is different than that of a mother of only cognitively normal children, she answered by saying that she felt as though her day was the same as anyone else’s except she needs to wake up her adult age son, because even at 21, time is still a relative thing for him (MF/KJ/MR/11.13.09/4A). Another respondent spoke with great joy about the responsibilities she has with her adult daughter with MR. Mackenzie must be woken up in the morning and be helped in getting ready for the day. Everyday, Mackenzie’s mom either has to get Mackenzie to work or her take her to work with her, because she cannot be left alone all day. Although Mackenzie has all the ability she needs to be productive, she gets off task easily and constantly needs to be reminded of what she should be doing (MF/TP/MR/09.28.09/1A-C). That responsibility falls upon Mackenzie’s mom, but when she spoke of it, there was no frustration or impatience in the way she explained this everyday, all day task. Rather, she spoke of it with obvious pleasure and happiness. One thing that Mackenzie’s mom did say was a mild struggle, was remembering that she has two other children that need her love and attention also. In the midst of all the extra help and guidance that Mackenzie requires, it is easy for her to forget that her two cognitively normal children need her love, attention, and guidance as well (MF/TP/MR/09.28.09/1U).
With all the added responsibility of raising a child with MR, comes a significant amount of more added stress and strain on a marriage. As one respondent was quoted, “Any disability will have an impact on a marriage” (MF/KJ/MR/11.13.09/4I). One family spoke of the added struggles that came even just during the pregnancy of a child with MR. Worry and wondering what the future is going to be like and being concerned with the unique task ahead of them (MF/RM/MR/11.09.09/3M). Most of the individuals interviewed, expressed a common feeling, that early on in the raising of their child with MR was the most difficult, and as time went on they learned and adapted more. With time and experience things got easier and more natural (MF/LB/MR/10.04.09/2Q), (MF/TP/MR/09.28.09/1S). These same respondents spoke of how once they were through the thick of it, their families and marriages were greatly strengthened by the struggles that they went through together. One respondent, when speaking on the impact her marriage took said, “Is it hard? HaHa! Hard doesn’t even begin to describe it. Is it worth it? You betcha! Do you feel sorry for yourself sometimes? Absolutely!” (MF/KJ/MR/11.13.09/4K). Tom’s parents spoke of how the impact upon their marriage was twofold. Initially they grew closer through caring for their child together. Now, Tom still needs a lot of help but his parents delight in the gift that God gave them and they do so together, when things were delightful and when things weren’t (MF/MR/MR/11.21.09/5I).
Something that stood out was the great need for spouses to be strong and supportive for one another regarding the added struggles and responsibilities that parents take on when raising a child with MR. One woman spoke of how it was very difficult for her husband to accept that his daughter had a disability, which ended up leaving to her to deal with the brunt of the stress concerning her daughters disability (MF/TP/MR/09.28.09/1T). Another respondent, when talking about spousal support was quoted saying, “Parents need to remember that they are spouses first and parents second. You have to take care of each other so you can take care of your kids. Sometimes, one spouse has to take up more of the burdens for a while”(MF/KJ/MR/11.13.09/4).
One of the biggest, and least thought of responsibilities that I ran across in my conversations with parents of individuals with MR, was the long-term commitment into their child’s adulthood. Although it is not uncommon for individuals with MR do be very independent and self functioning in their adult life, this is not always a guarantee and parents of individuals with MR realize that they may always have a child that they take care of, that never eventually leaves the nest to peruse a independent life of their own.For a Mackenzie’s parents, they know that they will never have the “empty nest.” Their now adult age daughter will live with them and be their responsibility for the entirety of their life. Mackenzie’s mom spoke of how they would like Mackenzie to be able to be independent of them but they are very aware that that probably will never happen (MF/TP/MR/09.28.09/1X). Tom’s mom was quoted saying, “Having a child that will be dependent upon you for life impacts what’s possible, what’s prudent” (MF/MR/MR/11.21.09/5J).
For parents, who’s child with MR is still young, there is a great unknown in regards to the future. For both Andy and Claire’s parents, the future and independence of their child is completely a mystery to them (MF/RM/MR/11.09.09/3G). Right now both of them are still in the regular school system but after they work there way out of that, their futures are unclear and their parents are already thinking and planning for the many possibilities that could happen with their child. For Andy, his parents hope that he can find a job that interests him and gives him a sense of purpose (MF/KJ/MR/11.13.09/4D).
The relationships that form between siblings of individuals with MR are just as unique as the people in them. In many respects these relationships and interactions are no different than those between only cognitively normal siblings. There is still love, hostility, tendencies, and frustrations just like any other siblings would have. Mackenzie has a younger sister whom Mackenzie has a tendency of mothering, and an older brother whom has a tendency of being very protective of his two younger sisters (MF/TP/MR/09.28.09/1L,K). Although these three siblings love and care for each other very much, they still experience typical sibling rivalry and hostility, like any other family does. Mackenzie and her younger sister have animosity toward one another like typical sisters would, except their animosity generally comes from Mackenzie wanting to be treated with respect and kindness from her sister (MF/TP/MR/09.28.09/1P). The daughter’s mother said that this sort of hostility started when her younger, cognitively normal daughter finally caught up to her older sister cognitively. Mackenzie is very high functioning, and she was very well aware that she was older and that she was being bossed around by her younger sister (MF/TP/MR/09.28.09/1M).
Andy’s mom expressed a similar relationship between her three sons. She talked about how they fight like “cats and dogs on a regular basis” but that all three of them are very protective of one another especially when it comes to Andy. Andy’s mom has witnessed and been told of many times when her two cognitively normal sons have set the record straight with someone about their brother Andy. They are not afraid of expressing a very “DON’T’MESS WITH MY BROTHER” sort of attitude when necessary (MF/KJ/MR/11.13.09/4G).
For individuals dealing with a sibling that is not as high functioning, frustrations and stressors can come in different forms. For Mary, an individual with a moderate level of MR, relating to her siblings is not an easy task. When speaking with Mary’s sister, she said that because of Mary’s significantly low IQ level, she has never had an actual conversation with her sister. The only way that she feels as though she knows and understands her sister is through observing her actions (MF/LB/MR/10.04.09/2N).
Although life for individuals with a sibling with MR is different, I did not run across one that would have their life any other way. For Andy’s brothers, they did not know life any differently because Andy is the oldest (MF/KJ/MR/11.13.09/4F). Mary’s sister expressed a similar feeling when she spoke of how she was too young to understand that there was anything different about her family situation than anyone else’s (MF/LB/MR/10.04.09/2J). The only things that Mary’s siblings every picked up on as being strange or unusual, was having to go visit her in the hospital when she was an infant due to all of her medical problems (MF/LB/MR/10.04.09/2I).
Some siblings of individuals with MR do notice a difference though. Tom’s mother realizes that it was somewhat painful for her other children to realize that their brother is not normal and that can be embarrassing but the overriding reaction among Tom’s siblings is one of acceptance, compassion and protectiveness (MF/MR/MR/11.21.09/5H).
A common theme that came up was a frustration with a sibling with MR during the time of middle school and junior high. Mary’s sister expressed that around that time in her life is when she started to not like Mary or the added struggles that came with having her as a sister. Mary’s sister said that because of Mary’s disability she felt like her family was inhibited from doing certain things and around the time of junior high this started to bother and annoy her. She also expressed that this feeling was a phase that she went through and got out of as a result of growing up and maturing (MF/LB/MR/10.04.09/2L).
As a result of my conversation with siblings of individuals with MR, something that I couldn’t help but notice was an obvious maturity and kindness that they seem to so effortlessly posses. When speaking with Claire’s sister, she was very adamant that she feels as though she has learned more from her sister than her sister has learned from her. She said that without a doubt, having Claire as a sister has made her a more patient person, and that she is constantly learning so much from her. She said that she sees much joy in her sister Claire (MF/RM/MR/11.09.09/3K). She can also see that in her childhood, she naturally grew up faster than most children as a result of her sister because the families main concern needed to be on Claire (MF/RM/MR/11.09.09/3L). As Claire grew and learned, so did her siblings with her, they pushed each other and Claire’s presence made their whole family more strong and patient as a whole (MF/RM/MR/11.09.09/3W).
Having a sibling with MR also seemed to have a great impact on an individuals relationships and views of others outside their immediate family unit. One respondent talked about how she noticed a great difference in the way she ended up seeing a lot of equality among those with disabilities (MF/LB/MR/10.04.09/2R). Another respondent said that having a sister with MR made her interact with people with exceptionalities in a more comfortable way and made her more willing to understand others backgrounds (MF/RM/MR/11.09.09/3O). A mother of two cognitively normal children and one child with MR was quoted saying, “Having a sibling with special needs makes you more understanding and accepting of others and not quick to judge. It makes you more vocal about fighting for the needs of others in public. It creates a soft place in your heart for people with special needs of all kinds” (MF/TP/MR/09.28.09/1). Much like their parents, sibling of individuals with MR have life long effects from their unique lives. Andy’s brothers have been named his guardians in their parents will. According to Andy’s mom her two youngest sons were offended at first when they found out that they would not take over till they were 30, but their parents made that decision so that they could ensure their two youngest sons a good start in their careers before they took on the full responsibility of their older brother (MF/KJ/MR/11.13.09/4H). Claire’s sister is currently a student in college studying to be a special education teacher and she claims that the motivation for her choice of that major was the life that she has lived with her sister who is MR (MF/RM/MR/11.09.09/3J).
One of the biggest differences in raising a child with MR is their education. Every child with MR that goes through the public school system has an IEP specifically created for them. Parental involvement is highly encouraged but as many parents of children with special needs have expressed, it can be a stressful and even scary experience especially at first. When speaking with one respondent she expressed that she always felt welcomed when she participated in her daughters IEP meetings but that she was originally intimidated by the IEP’s structure and that she was disturbed by hearing all of the things that were “wrong” with her daughter (MF/TP/MR/09.28.09/1H). Another girl I spoke with had the impression that her parents did not fully understand their role or their rights concerning the IEP meetings and thus were unable to participate to their full ability (MF/RM/MR/11.09.09/3H).
All of the parents that I spoke with went to all of their child’s IEP meetings regardless of their feelings about them or how involved they felt. One respondent said that she regularly came to her daughters IEP meetings with goals that she wanted for her daughter in mind and then work with her child’s educators to fit them into Mackenzie’s curriculum (MF/TP/MR/09.28.09/1G). This same parent said that she felt comfortable enough with her daughter’s teachers to come to them with ideas or concerns at anytime. She was quoted saying, “I can’t understand why a parent wouldn’t go to all of their child’s IEP meetings, it’s their right by law. I do not think that any parent has the right to complain about their child’s education if they themselves are not involved” (MF/TP/MR/09.28.09/1F,I,J)
Many parents, being that they know their child better than anyone else, have specific requests for their child’s education. Mary’s parents said that they had specific things that they wanted for her education and things that wanted to make sure she was a part of. They were very adamant in wanting her to be in the regular ed. classroom as much as possible and had ideas and opinions on how that could successfully be done. Although age wise Mary should be in the eighth grade, she does most things with the sixth grade class (MF/LB/MR/10.04.09/2F,G,H). For Claire, her parent’s only request was that their daughter could be placed in the same classroom as her best friend Evan (MF/RM/MR/11.09.09/3I).
ED 226
Mental Retardation
September 24, 2009
“Mental retardation is a condition diagnosed before age 18 that includes below-average general intellectual function, and a lack of the skills necessary for daily living.” as quoted by Medline Plus. Although mental retardation can seem like a rare occurrence, it is seen in somewhere between 1-3% of the population (Lewis, 2007). The term mental retardation covers a few different conditions that vary in cause and manifestation of disability. Like many other disabilities, MR varies greatly in its severity from profoundly impaired to mild or borderline retardation. Recently, there has been a significant shift away from focusing on the level of retardation, and more on the level of intervention and care needed to provide access to a normal life.
There is a general break down of different types of Mental retardation, but in the world of education many times there is also a focus on the IQ level of the individual, and where that puts them in the spectrum of severity. With an 85% concentration, the largest group of mental retardation falls in the mild range of retardation. The IQ level at this range is generally between 50-55 but can go up to 70. Moderate mental retardation covers about 10% of the population, and falls in the IQ level of about 35-40 but can go higher. Severe mental retardation only effects 3-4% of the population and is characterized by an IQ falling between about 20-25 but can vary. Profound mental retardation is the smallest group and quite rare with it only affecting 1-2% of the mentally retarded population. It is defined by having an IQ below 20-25 (2008).
Downs Syndrome is amongst the most commonly recognizable types of metal retardation, and is a product of an added chromosome, resulting in 47 instead of the standard 46 chromosomes. Downs is particularly recognizable to the lay person due to it’s profoundly common facial features. Although few people with downs have all the characteristics, some of the ones that may appear are almond shaped slanted eyes, flat nose, thick eyelids, broad and flat face and head shape, and a tongue that may appear too large for their mouth. People with downs are particularly prone to circulatory, gastrointestinal, and respiratory disorders but increasingly better medical care and antibiotics are greatly increasing the life expectancy of these people (2000).
Cretinism is a thyroid deficiency that results in severe mental retardation as a result of an endocrine imbalance. This generally happens during the prenatal and early postnatal parts of development. Individuals with cretinism normally have dwarf like qualities with an average height just over three feet, and short stubby extremities and features. If the condition is recognized and treated early on in infancy, the individual can have resulting positive benefits concerning intelligence, but will still experience damage to their nervous system and physical development (2000).
Cranial abnormalities are another type of mental retardation where there are significant abnormalities in the heads size and shape, and in which the causes are difficult to define or pin point. The condition macrocephaly, falls under this category and is defined by a case of “large head ness”, where the brain tissue and skull has an increase in size and weight. Individuals with this condition suffer from visual impairment, convulsions, and neurological symptoms. Mirroring this condition, microcephaly is a disorder in which the brain and skull are significantly smaller that normal, resulting from the brain not developing entirely. Individuals with microcephaly fall within the moderate, severe, and profound mental retardation spectrum (2000).
There are many found causes of mental retardation, but even in light of the modern medical world only 25% of cases can be pin pointed down to a specific cause. Out of the cases that there can be a cause identified, there are a few categories that it can be broken down into. The causes range from disorders that are inherited while the child is still in the womb to ones that can happen late in life.
Genetic and chromosomal factors are the cause of some cases of mental retardation. Mental retardation tends to run in families especially with mild retardation (2000). Genetics and chromosomal causes have a heavy influence in more rare conditions such as Downs Syndrome. In cases such as these, the deficiency is a result of metabolic alterations that produce a defect in the brain. There are many identifiable genetic abnormalities that can be past down such as Hunter Syndrome, Hurler Syndrome, Tay-Sachs Disease, Rett Syndrome, Galactosemia, and Lesch-Nyhan Syndrome amongst others.
Infections and toxic agents are other factors that can cause mental retardation to a child in the womb, but is not limited to this period of development. In some of these cases, certain diseases that the mother of the child carries such as German measles or Syphilis, may lead to brain damage of the child. Toxic agents such as carbon monoxide or lead and the taking of certain drugs by the mother also can result in brain damage (2000).
Malnutrition can also take part in some mental retardation. Especially early on in development, the lack of essential nutrients and proteins can result in permanent mental damage. This can come from the mother not getting the diet she needs or from the child experiencing severe malnutrition (2000). Trauma before, during, or after birth such as hemorrhaging, the lack of oxygen, or head injury can result in some cases of brain damage.
Different types and degrees of mental retardation can greatly change when and how it can be recognized. In some cases, the condition can be found before birth and in others it may take years into the child’s development to notice an abnormality. Generally, abnormalities at birth are recognized by an unusual physical appearance or a neurological deficiency (Sulkes, 2006).
Sometimes children will outwardly appear normal, but have signs of serious illness. More severe mental retardation many times will delay normal developmental basics such as rolling over, sitting up, and standing (Sulkes, 2006). As the child grows older aggression and self-injury are also signs that there could be a mental deformity (2006). Explosive outbursts and temper tantrums accompanied with frustrating situations in some cases are a common occurrences and strong indicators of a deficiency (Sulkes, 2007). Even things such as a lack of curiosity and prolonged infantile behavior are early signs of mental retardation (Lewis, 2007).
For most children with mental retardation, signs of an abnormality do not start to show until the time of preschool. The development of language is a very big indicator at this age being that children with mental retardation are generally slower to put words together, use words, and speak in complete sentences (Sulkes, 2006). As children get older mental retardation is noticed by IQ tests when the individual scores in an abnormally low range. For the majority of individuals with mental retardation, their cases are mild and allow them to participate socially and even academically at a normal rate for their first five years of their life, but start to struggle significantly when in a formal school setting. As a common rule of thumb, individuals with mental retardation fall behind socially and intellectually when developmental millstones come and pass (2006). Being that mental retardation can develop and multiple different times in an individuals development, ranging from in the womb to years into life, diagnosis tends to be different from individual to individual case. When a child is suspected of having mental retardation, they are normally evaluated by a team of professionals including
a developmental pediatrician or pediatric neurologist a psychologist, occupational or physical therapist, speech pathologist, special educator, social worker, or nurse (Sulkes, 2006). The professionals performing the evaluation will determine what tools and methods are appropriate to decide if the child is indeed considered mentally retarded (Barkoukis et al., 2009).
Early diagnosis of mental retardation is considered to be beneficial to the child so that an appropriate plan for education, and the learning of social skills can be made individually for the child (2006). There are many tests that may be used to determine the intelligence level of the child, some of them being the Weschsler-Intelligence Scale for Children (WISC-IV), the Bayley Scales of Infant Development, and the Vineland Adaptive Behavior Skills test (Barkoukis et al., 2009). In formal testing, there are three parts; interviews with the parents, observations with the child in question, and norm-referenced tests, such as those already mentioned (Sulkes, 2006). The purpose of the tests is to determine the level that they are intellectually functioning at and to possibly discover a cause. This will aid the professionals that end up working with the individual on how to plan individualized interventions that will increases the individuals level of function (Sulkes, 2006).
After a child has been diagnosed with some form of mental retardation, a treatment plan is developed. The word “treatment” when used in the cases of mental illness does not refer to changing the individuals IQ level or social capabilities but instead concentrates on the individual and unique education of the child. There currently are no treatments in the classical sense of the word for cognitive deficiency. Instead, special educators, language therapists, behavioral therapists and occupational therapists are all integral parts to the future development and education of the child (Harum, 2006).
In the United States there are federal government laws protecting and mandating the education of children that are considered mentally retarded. Due to their disability different and specialized approaches to education must be made and Individualized Education Plans (IEP’s) are created uniquely for each child in need of services. IEP’s are targeted to asses the individual needs of the child, specifically in relation to their disability, and then devise a plan to provide ways to reach the goals set by the IEP (2006). The primary goal of treatment for a child with mental retardation is to aid then in reaching their fullest potential, much like any other child with a normal level of IQ (Lewis, 2007).
Although there is no medication to change the level of cognitive impairment, a portion of individuals with mental retardation are prescribed psycho stimulants due to hyperactivity also known as ADD or ADHD. Up to 50% of individuals with mental retardation are prescribed these medications. Occasionally an individual may be medicated for coexisting conditions such as psychiatric disease or behavioral disturbances (Harum 2006).
Another common intervention to mental retardation is family therapy and support groups to help families with a mentally retarded member cope with the daily demands and struggles that come along with raising a mentally retarded child. These services tend to focus on the love and support of the family unit (2006).
Although many times, mental retardation is not possible to avert, there are precautions that can be taken to prevent some cases. Genetic screening for individuals that know there is a possibility for deformity that runs in their family is available. Also, early screenings of a child before birth may sometimes catch a case in time to prevent some level of mental deformity. There are government programs that have been instated to insure sound nutrition to be offered to the underprivileged to prevent cases of malnutrition. There are environment programs to reduce the level of exposure toxins but the effects of this may take years to form (Lewis, 2007).
Works Cited
Barkoukis, A., Reiss, N.S., & Dombeck, M. (2009). Mental retardation: diagnosis. Retrieved from http://www.mentalhelp.net/poc/view_doc.php?type=doc&id=14490&cn=37
Harum, K. (2006, April 7). Mental retardation: treatment and medication. Retrieved from http://emedicine.medscape.com/article/1180709-treatment
Lewis, R.A. (2007, November 12). Mental retardation. Retrieved from http://www.nlm.nih.gov/medlineplus/ency/article/001523.htm
Sulkes, S.B. (2006, October). Mental retardation/intellectual disability. Retrieved from http://www.merck.com/mmhe/sec23/ch285/ch285a.html
(2008, May 12). Mental retardation (developmental disability). Retrieved from http://psyweb.com/Mdisord/jsp/menret.jsp
(2006, October 31). Mental retardation. Retrieved from http://www.hmc.psu.edu/childrens/healthinfo/m/mentalretardation.htm
(2000). Dial for health. Retrieved from http://www.dialforhealth.net/default.asp?loc=contactus.asp
Marti Feldhake
November 21, 2009
ED 226
Part 2
Anyone that has ever met or interacted with an individual with MR will tell you that having MR does not mean that an individual does not have a specific personality, likes and dislikes. As one respondent answered when speaking about her younger sister said, “Claire knows what she likes” (MF/RM/MR/11.09.09/3C). People with MR develop a personality and find things that they enjoy just like any other cognitively “normal” person. A common theme that I recognized in my interviews with people was a tendency toward activities that were many times very solitary and repetitive. One respondent with a younger sister with a moderate case of MR said, “Mary would occupy her time with things like television, music, and twirling pretty things” (MF/LB/MR/10.04.09/2A). Another respondent talked of how her sister had a large imagination and always found ways to entertain herself (MF/RM/MR/11.09.09/3K). The same respondent said her sister had a strong tendency of being very organized in the way that she would play and occupy herself. She said her sister Claire would be highly organized and in the way that she played and would take her time to set things up (MF/LB/MR/10.04.09/3B).
Also, in much of my conversation with people, I found that most individuals with MR have relationships and friendships with cognitively average people that differ very slightly from those without an individual with MR. One respondent talked of the relationship between her sister, who has mild MR, and her best friend Evan who does not have a disability (MF/RM/MR/11.09.09/3E).
People that know individuals with MR will also tell you that having MR is not synonymous with incapable or incompetent. One respondent I spoke to talked about the capabilities of her high functioning downs syndrome son. She said that once she woke him up and made sure that he was out of bed in the morning that he is able to take care of himself and get ready for school on his own (MF/KJ/MR/11.13.09/4B). Other than keeping an eye on him to make sure he doesn’t miss the school bus, Andy is fully capable of being independent (MF/KJ/MR/11.13.09/4B). Andy’s mother also spoke of how everyday after school Andy comes home to an empty house for about an hour until she can get home from work. While Andy is at home alone he knows whom to call if there were to be a problem and Andy’s family has good neighbors that he could go to if he needed anything immediately (MF/KJ/MR/11.13.09/4C).
A mother spoke of her adult son Tom who has downs syndrome, “Tom works hard, and generally works cheerfully. He’s a good example, not just to his siblings but to me as well. He likes to find ways to help, to surprise us. This conveys at least two things; he’s capable and he uses his abilities to express love and contribute to the good of the family as a whole. There are many things Tom can and does do and do very well, and that is both a real help and a good example” (MF/MR/MR/11.21.09/5A). At the same time, even Tom can sometimes realize that he has limitations as a result of his disability. Tom’s mother said that as he grew older Tom started to recognize differences more and more. Things like not being able to keep up with the flow of conversation even as well as his seven-year-old brother, for example, and it bothers him (MF/MR/MR/11.21.09/5L). Another individual that I interviewed spoke of how although her sister is not incredibly high functioning she wants and desires to be independent and always bathes and dresses herself. This same girl goes to bed early and wakes up on her own (MF/LB/MR/10.04.09/2C).
Although it became very apparent in my interviews with people on this topic, that individuals with MR are very capable beings, many times there is a very specific and necessary amount of guidance needed to aid them in their pursuit of independence. On respondent spoke of her adult age daughter and how she handles the amount of guidance and overseeing she gives her. She spoke of her daughter Mackenzie and how she has learned over the years that Mackenzie is fully capable of handling tasks that she is given but that she can’t be given more than one or two things to do at one time because otherwise she will not be able to stay on task (MF/TP/MR/09.28.09/1D).
On of the topics that my interviewees talked very passionately about was the affect of disability on the family. In all of my conversations it was unanimous that no matter which way you play it, disability will affect the family. For most, those effects are positive and beneficial. One of the people that I interviewed felt very strongly on this topic in particular. In my conversation with her she said that she thinks every family should have a child with special needs. She said, “Having a child with special needs makes you want to go the extra mile to help others, it gives you more compassion.” (MF/TP/MR/09.28.09/1R) This same woman spoke of how having a child with disability helps to keep her family together and to keep her focus on her family. She thought having Mackenzie in her life forced her to focus on her family dominantly instead of something else like her occupation, which in her life, takes a back seat to her daughter (MF/TP/MR/09.28.09/1V). As a result of living and learning with Mackenzie, their family as a whole has had their eyes opened to the great need in our world today for the acceptance of all people (MF/TP/MR/09.28.09/1Q).
Another common topic that was talked about greatly was the notion of family’s and individuals possibly missing out on things as a result of a family member with MR. For most families that I spoke to, they adamantly claimed that their lives, and what they experienced in them, was not changed as a result of having a member of the family being MR. A mother of a adult son with MR said that her family did not miss out on anything that a family without a child with MR could do (MF/KJ/MR/11.13.09/4L). Instead, most people I spoke to talked about the ways in which they altered situations to fit their families specific and unique qualities and needs. One of the individuals I spoke with has a young sister with MR and she said that she has witnessed over the years the way that her family simply adjusts ordinary things just a little bit to fit Mary’s needs (MF/LB/MR/10.04.09/2S). Mary, an individual with moderate Downs Syndrome, has a tendency of getting impatient in common everyday situations. When Mary gets upset or mad about something, she cannot understand why she feels that way and gets frustrated (MF/LB/MR/10.04.09/2M). Its situations like these that Mary’s family works to avoid in their small alterations. Many of these alterations have to do with simply letting m Mary be involved in everything that the family does even if she can’t do everything “perfectly.” Mary’s family eats dinner together every night and afterward prays a rosary together. Although she does not know how to do it correctly, Mary is given the task of leading a decade of the rosary during these family prayer times (MF/LB/MR/10.04.09/2B).
Tom’s mom expressed a similar theory for her family. She talked of how doing something’s with Tom can be more complicated and require special consideration. They normally result in not everyone being able to do exactly what they’d like to do, but when one of these issues arises it’s an opportunity to do what families are made to do: whatever’s necessary to love one another while meeting the needs of each (MF/MR/MR/11.21.09/5M).
If there is one entity affected by MR more than the family unit, it would be marriage. Raising a child with MR is a uniquely difficult task unlike any other, posing problems and hurdles that no other situation can. Monetarily speaking, parents of a child with MR generally take on more responsibility with medical needs. Out of all of the individuals that I spoke with only one said that never encountered any added health services or medical bills as a result of their child or siblings MR disability (MF/TP/MR/09.28.09/1E). One respondent spoke of how her mother had to tale her younger sister Mary to another city, a distance away to see a special doctor every six months (MF/LB/MR/10.04.09/2E). Mary was born with significant health problems concerning her heart when she was born and still deals with it today fourteen years later. Fortunately, Mary’s family gets some financial help from the government to ease the added cost of medical bills (MF/LB/MR/10.04.09/2D).
A common symptom of Downs Syndrome is loose joints. Although this may seen harmless and insignificant it is not unusual for individuals with MR to experience added health problems as a result of this condition. One respondent spoke of her younger sister Claire. She talked of how she felt her family was fortunate because Claire did not have many health problems as a result of her Downs Syndrome compared to others. Claire did have to have knee surgery at a very young age as a result of her loose limbs and also she saw a physical therapist for a few years to help develop her fine motor skills (MF/RM/MR/11.09.09/3F). Tom’s family experienced a significant financial impact at first but due to excellent health insurance they did not feel the full force of it (MF/MR/MR/11.21.09/5B). Besides speech, OT and PT Tom’s parents have not experienced any unusual expenses directly connected to his medical condition (MF/MR/MR/11.21.09/5C).
Some families are not quite as fortunate, such as in the case of Andy’s family. Andy, a 21 years old boy with Downs Syndrome has had significant health problems since he was born. His mother spoke of how financially their family has struggled at times to cover some of the medical and therapy bills that their insurance would not cover. As a result they had to learn to balance what Andy needed and what the rest of the family needed. Andy’s mom said that they have lived a much more simple life than many of their friends and families but they feel as though they have not “missed” out on anything (MF/KJ/MR/11.13.09/4E). This was a common reaction that I encountered when this topic was discussed, that a lack of extra money and resources did not result in a lack of happiness or fulfillment in life. Rather, many families valued and focused on what they had been given far more than what they lacked in the worldly sense.
Monetary and health responsibilities are only the beginning of the many duties that parents of children with MR take on. Raising and parenting a child with MR is a much different commitment than that of raising a cognitively normal child. Mary’s parents will attest to this. Mary was adopted right after she was born and her parents were well aware of her Downs Syndrome long before her birth. In adopting Mary they committed to a different obligation than that of their other children (MF/LB/MR/10.04.09/2O). One respondent, when asked how her life is different than that of a mother of only cognitively normal children, she answered by saying that she felt as though her day was the same as anyone else’s except she needs to wake up her adult age son, because even at 21, time is still a relative thing for him (MF/KJ/MR/11.13.09/4A). Another respondent spoke with great joy about the responsibilities she has with her adult daughter with MR. Mackenzie must be woken up in the morning and be helped in getting ready for the day. Everyday, Mackenzie’s mom either has to get Mackenzie to work or her take her to work with her, because she cannot be left alone all day. Although Mackenzie has all the ability she needs to be productive, she gets off task easily and constantly needs to be reminded of what she should be doing (MF/TP/MR/09.28.09/1A-C). That responsibility falls upon Mackenzie’s mom, but when she spoke of it, there was no frustration or impatience in the way she explained this everyday, all day task. Rather, she spoke of it with obvious pleasure and happiness. One thing that Mackenzie’s mom did say was a mild struggle, was remembering that she has two other children that need her love and attention also. In the midst of all the extra help and guidance that Mackenzie requires, it is easy for her to forget that her two cognitively normal children need her love, attention, and guidance as well (MF/TP/MR/09.28.09/1U).
With all the added responsibility of raising a child with MR, comes a significant amount of more added stress and strain on a marriage. As one respondent was quoted, “Any disability will have an impact on a marriage” (MF/KJ/MR/11.13.09/4I). One family spoke of the added struggles that came even just during the pregnancy of a child with MR. Worry and wondering what the future is going to be like and being concerned with the unique task ahead of them (MF/RM/MR/11.09.09/3M). Most of the individuals interviewed, expressed a common feeling, that early on in the raising of their child with MR was the most difficult, and as time went on they learned and adapted more. With time and experience things got easier and more natural (MF/LB/MR/10.04.09/2Q), (MF/TP/MR/09.28.09/1S). These same respondents spoke of how once they were through the thick of it, their families and marriages were greatly strengthened by the struggles that they went through together. One respondent, when speaking on the impact her marriage took said, “Is it hard? HaHa! Hard doesn’t even begin to describe it. Is it worth it? You betcha! Do you feel sorry for yourself sometimes? Absolutely!” (MF/KJ/MR/11.13.09/4K). Tom’s parents spoke of how the impact upon their marriage was twofold. Initially they grew closer through caring for their child together. Now, Tom still needs a lot of help but his parents delight in the gift that God gave them and they do so together, when things were delightful and when things weren’t (MF/MR/MR/11.21.09/5I).
Something that stood out was the great need for spouses to be strong and supportive for one another regarding the added struggles and responsibilities that parents take on when raising a child with MR. One woman spoke of how it was very difficult for her husband to accept that his daughter had a disability, which ended up leaving to her to deal with the brunt of the stress concerning her daughters disability (MF/TP/MR/09.28.09/1T). Another respondent, when talking about spousal support was quoted saying, “Parents need to remember that they are spouses first and parents second. You have to take care of each other so you can take care of your kids. Sometimes, one spouse has to take up more of the burdens for a while” (MF/KJ/MR/11.13.09/4).
One of the biggest, and least thought of responsibilities that I ran across in my conversations with parents of individuals with MR, was the long-term commitment into their child’s adulthood. Although it is not uncommon for individuals with MR do be very independent and self functioning in their adult life, this is not always a guarantee and parents of individuals with MR realize that they may always have a child that they take care of, that never eventually leaves the nest to peruse a independent life of their own. For a Mackenzie’s parents, they know that they will never have the “empty nest.” Their now adult age daughter will live with them and be their responsibility for the entirety of their life. Mackenzie’s mom spoke of how they would like Mackenzie to be able to be independent of them but they are very aware that that probably will never happen (MF/TP/MR/09.28.09/1X). Tom’s mom was quoted saying, “Having a child that will be dependent upon you for life impacts what’s possible, what’s prudent” (MF/MR/MR/11.21.09/5J).
For parents, who’s child with MR is still young, there is a great unknown in regards to the future. For both Andy and Claire’s parents, the future and independence of their child is completely a mystery to them (MF/RM/MR/11.09.09/3G). Right now both of them are still in the regular school system but after they work there way out of that, their futures are unclear and their parents are already thinking and planning for the many possibilities that could happen with their child. For Andy, his parents hope that he can find a job that interests him and gives him a sense of purpose (MF/KJ/MR/11.13.09/4D).
The relationships that form between siblings of individuals with MR are just as unique as the people in them. In many respects these relationships and interactions are no different than those between only cognitively normal siblings. There is still love, hostility, tendencies, and frustrations just like any other siblings would have. Mackenzie has a younger sister whom Mackenzie has a tendency of mothering, and an older brother whom has a tendency of being very protective of his two younger sisters (MF/TP/MR/09.28.09/1L,K). Although these three siblings love and care for each other very much, they still experience typical sibling rivalry and hostility, like any other family does. Mackenzie and her younger sister have animosity toward one another like typical sisters would, except their animosity generally comes from Mackenzie wanting to be treated with respect and kindness from her sister (MF/TP/MR/09.28.09/1P). The daughter’s mother said that this sort of hostility started when her younger, cognitively normal daughter finally caught up to her older sister cognitively. Mackenzie is very high functioning, and she was very well aware that she was older and that she was being bossed around by her younger sister (MF/TP/MR/09.28.09/1M).
Andy’s mom expressed a similar relationship between her three sons. She talked about how they fight like “cats and dogs on a regular basis” but that all three of them are very protective of one another especially when it comes to Andy. Andy’s mom has witnessed and been told of many times when her two cognitively normal sons have set the record straight with someone about their brother Andy. They are not afraid of expressing a very “DON’T’MESS WITH MY BROTHER” sort of attitude when necessary (MF/KJ/MR/11.13.09/4G).
For individuals dealing with a sibling that is not as high functioning, frustrations and stressors can come in different forms. For Mary, an individual with a moderate level of MR, relating to her siblings is not an easy task. When speaking with Mary’s sister, she said that because of Mary’s significantly low IQ level, she has never had an actual conversation with her sister. The only way that she feels as though she knows and understands her sister is through observing her actions (MF/LB/MR/10.04.09/2N).
Although life for individuals with a sibling with MR is different, I did not run across one that would have their life any other way. For Andy’s brothers, they did not know life any differently because Andy is the oldest (MF/KJ/MR/11.13.09/4F). Mary’s sister expressed a similar feeling when she spoke of how she was too young to understand that there was anything different about her family situation than anyone else’s (MF/LB/MR/10.04.09/2J). The only things that Mary’s siblings every picked up on as being strange or unusual, was having to go visit her in the hospital when she was an infant due to all of her medical problems (MF/LB/MR/10.04.09/2I).
Some siblings of individuals with MR do notice a difference though. Tom’s mother realizes that it was somewhat painful for her other children to realize that their brother is not normal and that can be embarrassing but the overriding reaction among Tom’s siblings is one of acceptance, compassion and protectiveness (MF/MR/MR/11.21.09/5H).
A common theme that came up was a frustration with a sibling with MR during the time of middle school and junior high. Mary’s sister expressed that around that time in her life is when she started to not like Mary or the added struggles that came with having her as a sister. Mary’s sister said that because of Mary’s disability she felt like her family was inhibited from doing certain things and around the time of junior high this started to bother and annoy her. She also expressed that this feeling was a phase that she went through and got out of as a result of growing up and maturing (MF/LB/MR/10.04.09/2L).
As a result of my conversation with siblings of individuals with MR, something that I couldn’t help but notice was an obvious maturity and kindness that they seem to so effortlessly posses. When speaking with Claire’s sister, she was very adamant that she feels as though she has learned more from her sister than her sister has learned from her. She said that without a doubt, having Claire as a sister has made her a more patient person, and that she is constantly learning so much from her. She said that she sees much joy in her sister Claire (MF/RM/MR/11.09.09/3K). She can also see that in her childhood, she naturally grew up faster than most children as a result of her sister because the families main concern needed to be on Claire (MF/RM/MR/11.09.09/3L). As Claire grew and learned, so did her siblings with her, they pushed each other and Claire’s presence made their whole family more strong and patient as a whole (MF/RM/MR/11.09.09/3W).
Having a sibling with MR also seemed to have a great impact on an individuals relationships and views of others outside their immediate family unit. One respondent talked about how she noticed a great difference in the way she ended up seeing a lot of equality among those with disabilities (MF/LB/MR/10.04.09/2R). Another respondent said that having a sister with MR made her interact with people with exceptionalities in a more comfortable way and made her more willing to understand others backgrounds (MF/RM/MR/11.09.09/3O). A mother of two cognitively normal children and one child with MR was quoted saying, “Having a sibling with special needs makes you more understanding and accepting of others and not quick to judge. It makes you more vocal about fighting for the needs of others in public. It creates a soft place in your heart for people with special needs of all kinds” (MF/TP/MR/09.28.09/1). Much like their parents, sibling of individuals with MR have life long effects from their unique lives. Andy’s brothers have been named his guardians in their parents will. According to Andy’s mom her two youngest sons were offended at first when they found out that they would not take over till they were 30, but their parents made that decision so that they could ensure their two youngest sons a good start in their careers before they took on the full responsibility of their older brother (MF/KJ/MR/11.13.09/4H). Claire’s sister is currently a student in college studying to be a special education teacher and she claims that the motivation for her choice of that major was the life that she has lived with her sister who is MR (MF/RM/MR/11.09.09/3J).
One of the biggest differences in raising a child with MR is their education. Every child with MR that goes through the public school system has an IEP specifically created for them. Parental involvement is highly encouraged but as many parents of children with special needs have expressed, it can be a stressful and even scary experience especially at first. When speaking with one respondent she expressed that she always felt welcomed when she participated in her daughters IEP meetings but that she was originally intimidated by the IEP’s structure and that she was disturbed by hearing all of the things that were “wrong” with her daughter (MF/TP/MR/09.28.09/1H). Another girl I spoke with had the impression that her parents did not fully understand their role or their rights concerning the IEP meetings and thus were unable to participate to their full ability (MF/RM/MR/11.09.09/3H).
All of the parents that I spoke with went to all of their child’s IEP meetings regardless of their feelings about them or how involved they felt. One respondent said that she regularly came to her daughters IEP meetings with goals that she wanted for her daughter in mind and then work with her child’s educators to fit them into Mackenzie’s curriculum (MF/TP/MR/09.28.09/1G). This same parent said that she felt comfortable enough with her daughter’s teachers to come to them with ideas or concerns at anytime. She was quoted saying, “I can’t understand why a parent wouldn’t go to all of their child’s IEP meetings, it’s their right by law. I do not think that any parent has the right to complain about their child’s education if they themselves are not involved” (MF/TP/MR/09.28.09/1F,I,J)
Many parents, being that they know their child better than anyone else, have specific requests for their child’s education. Mary’s parents said that they had specific things that they wanted for her education and things that wanted to make sure she was a part of. They were very adamant in wanting her to be in the regular ed. classroom as much as possible and had ideas and opinions on how that could successfully be done. Although age wise Mary should be in the eighth grade, she does most things with the sixth grade class (MF/LB/MR/10.04.09/2F,G,H). For Claire, her parent’s only request was that their daughter could be placed in the same classroom as her best friend Evan (MF/RM/MR/11.09.09/3I).